From the Daddy Desk: A Clear View to History

I think I have spiders under the hood of my car. Every morning when I walk to the driveway, both of my side mirrors are covered in cobwebs. Then, every day as I drive to the park-and-ride, I roll down the windows and wipe the webs away. The next morning I do the same thing all over again. The spiders and I have had this daily tit-for-tat for at least a few months.

When I took my driving test, one of the things I got marked down for was not checking the mirrors enough. I’m probably still guilty of that. So one of the benefits of these cobwebs is they give me an opportunity to check out what’s going on behind me–the road that led me to where I am.

I’d like to take a moment now to do the same thing with the history of Down syndrome. Will you join me for a trip to Victorian England?

Once upon a time there was a British doctor named John Langdon Down. He was a rising star in the medical community, and he surprised the establishment by rejecting a career at a prestigious hospital, instead opting to slum it with the “idiots,” “imbeciles,” and “feeble-minded” then packed into institutions.

Down was apparently an advocate for improving conditions at these institutions, and so by the standards of his day, he may have been something of a progressive. He was also, however, a virulent racist and staunch social Darwinist, which is where the genetic condition we now call Down syndrome comes in.

You see, Down had a problem. He was a clinician, and every day he went to work and a parade of anxious parents peppered him with questions about what kind of “mental lesions” their kids had, and why they were born that way. But as of the mid-nineteenth century, the medical community hadn’t given much thought to classifying the different kinds of developmental disabilities, or to understanding their causes.

Down wanted to change that. So in 1866, he published a paper called Observations on an Ethnic Classification of Idiots, which was one of the first times anyone in Western medicine identified the class of people we now refer to as individuals with Down syndrome.

At the time, Darwin’s Origin of Species was hot off the presses, and the concept of evolution had captured the imaginations of white Europeans as an explanation for their self-anointed superiority over everything else on Earth. Darwin also influenced a popular theory of uterine development called “recapitulation,” which theorized that embryos inside the womb passed through every phase of human evolution, from fish to reptile to mammal to human–and if you were lucky, all the way up to Caucasian.

Against this backdrop, Down looked around at all the “idiots” under his care, and a light bulb went on. “By golly,” he thought, “most of these ‘imbeciles’ don’t even look White!” Instead, he believed, most of them looked either “Ethiopian,” “Malay,” Native American, or of “the Mongolian type.”

This last group was most interesting to Down. He gave a lengthy description of the physical characteristics that, in his view, set the “Mongoloid idiots” apart from the “great Caucasian family,” and he concluded that the problem with this group of people was basically that they weren’t White. Instead, he believed, their fetal development had been arrested at a lower stage of human evolution–Mongolian–which explained their cognitive “degeneration.”

The cause of this phenomenon? After apparently conducting some sort of anectodal survey, Down concluded that most representatives of the “Mongolian type of idiocy” shared a common denominator: tuberculosis in their parents.

In sum, Down argued that people with Down syndrome were “stuck” at Mongolian on the evolutionary scale because their parents had TB. Remarkably, Down concluded that this theory “furnish[ed] some arguments in favour of the unity of the human species[,]” because according to him, diseases had the power to break down racial barriers.

This history teaches us some important lessons, two of which I’ll highlight (thank you Captain Obvious).

First, unbeknownst to most modern Americans, words like “idiot,” “imbecile,” “moron,” and “feeble-minded” are heavy with the weight of history. These terms were used for many years as clinical diagnoses to institutionalize, forcibly sterilize, and otherwise marginalize large groups of people who weren’t even deemed worthy to walk the same streets as everybody else. In addition, at least after Down’s paper, these words took on a sharply racist tone. Similar (though of course not identical) to the “N” word, these words still carry a painful sting for many in the community. We would all be well-served to bear this history in mind the next time we’re tempted to use such words to mockingly describe another person as “not smart.”

Second, why in Heaven’s name do we still refer to T21 as “Down syndrome”???!!! I don’t know about you, but before I read Down’s paper, I imagined him as a mild-mannered geneticist in a lab coat working hard to figure out the extra chromosome thing. Not so. That guy’s name is Jérôme Lejeune, who did his research in the 1950s. By calling T21 “Down syndrome,” we all unwittingly perpetuate Down’s offensive legacy, not to mention the junk science that spawned such senseless tragedies as mass institutionalization, eugenics, and forced sterilization–i.e., the unspeakable suffering of countless human beings. Wouldn’t it be better to simply call this genetic condition T21, or even “Lejeune syndrome”?

It can be challenging to wipe away the cobwebs and take a hard look at our past. What we see is often ugly and difficult to swallow. On the other hand, unless and until we’re willing to take on this hard work, we’ll always just grasp in the dark as we try to move forward toward a better future.

My thoughts exactly! Thanks for clearing this up. I wasn’t comfortable with the label either, but didn’t have enough understanding to change it. Knowledge is power. Now I can say, my son is T21, formerly known as Down syndrome. The word syndrome connotes disorder and affliction. My son is not afflicted. He is fearfully and wonderfully made. Thanks again!

I agree. In that sense, “syndrome” is a little similar to idiot, etc., because although it derives from an ostensibly clinical/diagnostic origin, it can carry a subtle message of “defect” or “error,” which many would stand by (even in our community), but I don’t.

I cringe every time I hear anyone use the terms “idiot,” “moron,” or “imbecile” – just as much as I do when I hear “retard,” and I’ve written about it. It’s even more painful – and ironic – when those words are used by parents of kids with intellectual disabilities. I guess not everyone realizes the origins of those terms.

I think there’s room for healthy debate about the word “disability” as well–which I still use (with reservations)–but that’s a mammoth issue for another day, not to mention a much harder word to get around in daily life.

Like you, I used to be less than impressed with Dr Langdon Down, but when I learned the full story, I was actually able to put it into perspective and appreciate his work.

While Langdon Down may appear to be ‘virulently racist’, he was just a person of his times in that regard; I doubt there would be many people back then who didn’t subscribe to such a perspective. It was absolutely prevalent. But in another regard, he was a trailblazer. He may have considered people with Down syndrome to result from some kind of genetic throwback, but despite this he recognised them as having gifts and talents, and (remarkably for that time), that they could learn, and keep learning. His institution was unlike any other, as it was designed to help the people with Down syndrome who lived there to have good lives and develop their gifts. He built a theatre where people with Down syndrome learned performing arts of all kinds, and were treated with respect and kindness.

Down’s Syndrome UK is now located at Normansfield and the theatre has been restored and is used regularly.

A little known fact is that Dr Langdon Down himself had a grandson with Down syndrome, years after his groundbreaking work.

It’s easy to look back and criticise, but just think about the attitudes of our community, and imagine how they will be regarded in the future…

Thanks for the comment. You’ve added some good historical perspective. I don’t actually think you and I are saying anything all that different. I agree that racism was common back then. (It remains so today, just a little less honest.) I also agree that Down appears to have done some positive things with his career.

What I wanted to share, though, was the truth–which many people do not know–that the term Down syndrome has its own unique history, which some might even refer to as “baggage.”

I am confident that neither you nor I would want to personally live in Down’s institution, let alone place our children there. Nor would we want ourselves or our children to be referred to as idiots, imbeciles, morons, or retards, all of which appear to have essentially “clinical” pedigrees. Yet this is where our community is coming from–I say we look it in the face.